The Story

In August of ’06 I was getting over a nasty cold and noticed that when I blinked I had this kind of after image, kind of like if you look at a light bulb or the sun and then look away and blink, like a ring or a circle? Except that if you get an after image like that from a light source, when your eyes have readjusted that stops happening when you blink. My ring didn’t go away. I also started noticing that there was a dimness in the same place when I wasn’t blinking.

So, I go to an eye doctor based strictly on his proximity to the house, because we had just moved and I didn’t have doctors here yet. He does an exam and starts asking me what I think are crazy stupid questions like “have you ever lived in the Mississippi River Valley, have you ever had chickens, have you ever spent a lot of time with bats?” (seriously? Dude, where did that diploma come from… Walgreens?). He keeps looking in my eye and then tells me that it seems that there is something lodged in my retina and I need to go to a retinal specialist. If it’s what he thinks it is I need to go super quick because I could lose the vision in that eye at any time (um, bedside manner, what?). He gets me an appointment at a retinal specialist and I leave, then quickly lose my mind, calling my husband freaking out… Good times.

The next day we go to the retinal specialist and they do some more examinations and ask the same seemingly asinine questions about bats and chickens and Mississippi. Then the Dr (this one has even less of a bedside manner if you can believe it) tells me that he’s diagnosing me with presumed Ocular Histoplasmosis. Histo (which I was soon to learn is what the cool kids call it on the interweb) is picked up by humans when they inhale the minuscule spores of a fungi which grows on certain species of bat or bird feces given the proper weather/humidity conditions. So, while I never lived in Mississippi or anywhere near it, I did spend a lot of time in chicken coops as a small child (we had them at my preschool and got to take turns collecting the eggs) and we had a small colony of bats that lived in the old barn we used as a garage at home (we evicted them when I was around 9 or so after they tried moving into the house. Mom was not ok with that.) when I lived in northern Michigan from ’79 to ’92. We hypothesize that I picked it up there.

As it’s been explained to me, histo gets into the body through inhalation and then the spores like to go one of two places; lungs and eyeballs. If they go to the lungs, you get flu like symptoms and when they pass, the spores are gone. This can get complicated for people with pre-existing respiratory issues but most people never know it happened. If the spores go to the eyeball they get stuck in the retina and can’t get out. The only way to get them out is to laser them out. They can lay dormant there for years and years before “leaking” or causing the blood vessels around them to start to leak small amounts of fluid into the retina.

The final test was looking at what’s called an Amsler Grid. It’s supposed to look like this:

But for me it looked something like this:

If you’re squeamish the next paragraph may not be for you as I’m going to talk about needles and eyeballs living together in harmony, so fair warning.

My histo spots are in the retina of my left eye and are very close to my optic nerve. Because of their placement lasering doesn’t make any sense (no way to not hit the optic nerve which would leave me with no vision in that eye at all). The treatment option we ended up with is an injection of a drug that’s typically used for patients with Age Related Macular Degeneration. For me, it makes the blood vessels chill out and stop leaking in reaction to the spots. I got my first retinal shot the day I got my diagnosis. It’s not really as bad as it sounds, they numb the surface of the eye with some drops and then they hold it open with a caliper thing and then inject the medicine into the retina going in through the white part of the eye. It is not painful per se, but is really uncomfortable and is very sore for a few days. The freaky/cool thing is that i can see the medicine as it comes out of the syringe. It looks like sparkly smoke.

I do have some permanent damage and every time I have another flare up I get a bit more scar tissue which is why it’s important to get to it quickly and get the medicine in there to make it stop.

Shortly after the diagnosis I started doing some “research” (AKA, googling “histo spots” while drowning my sorrows in a nice Cabernet) to see what others with this condition had experienced. I kept coming across posts on random message boards from young women in “The Histo Belt” (finally, all of those crazy Mississippi questions started making sense!!) who claimed that their symptoms increased during pregnancy and never got better, and a couple from women who claimed that during delivery of their babies they had suffered a rupture of a blood vessel previously weakened by their histo spots (resulting in vision loss). I had absolutely zero interest in experiencing those things firsthand and considering the placement of my spots, “rupture” = significant loss of vision, AKA bunch-o-blindness. I asked my original retinal specialist and he told me in his most robotic fashion that I could expect a similar experience.

FuckBalls.

So. We began investigating adoption pretty quickly after the diagnosis because we knew it would take some time to figure out what we were doing (domestic, international, etc). We had no idea the ride we were in for.

It’s a long story but ends with us spending you don’t want to know how much money and over 18 months in process through two different countries (Russia and Vietnam) and two different agencies before we looked up one day and realized my eyeball had been stable for almost a year. In that same timeframe we had gotten pretty much nowhere in our adoption pursuit. So, we started re-evaluating the situation. Since the diagnosis I had gotten a new retinal specialist who I meshed with a lot better and felt that I could discuss the situation with rationally. He also turned out to be much less convinced that my eyeball would shrivel up and roll across the room and into a dust covered heating vent if I came anywhere near a positive pregnancy test than the last guy had been. He basically said “I’m not going to tell you there’s no risk, there definitely is. But I totally get why you’re considering it and I’m willing to work with you and your OB on a treatment plan.”

That’s a new ballgame.

So, I got a new OB, she researched, my retinal guy researched, I researched, and we settled on a plan which involved a lot more monitoring of my vision, more frequent exams and a treatment plan that changed depending on how far along the pregnancy was as well as the severity of the symptoms presenting. Christopher and I took a deep breath and jumped in to “see what happened” although we stayed in line for our Vietnam adoption. We were tremendously blessed and got pregnant very quickly and easily.

Our master plan involved me having a scheduled cesarean section, which I flippantly referred to throughout my pregnancy as “The Slice… and Yank!”

For the record, the flippant attitude was a way to deal with my feelings about the situation. As I said, I was pretty certain before I got knocked up that I wasn’t going to get a vaginal birth, med free or otherwise. Obviously I hoped I would get through my pregnancy without any histo complications, because eyeball needles aren’t my idea of a good time. But complications or not, we were not planning to push our luck. The decision was made before I ever peed on a stick that I would be delivering via C-Section. My doctors made lots of assurances that we’d stay flexible and roll with the punches but everyone was clear that a vaginal delivery was not worth blindness. There was no way to guarantee, even with no flare up, that pushing wouldn’t burst the vessels and cause immediate and irreparable vision loss. Why risk it?

I remember the day I figured out I was considering it. I was sitting at my desk on a conference call, looking at birthing balls on Amazon. I realized that I’d been kidding myself all along. I wanted to be normal, I wanted to be healthy, and I wanted to push a baby out of my vag. I wanted the experience that everyone else talks about. I wanted to labor. I wanted to give birth. I wanted to worry about pooping on the table. I wanted to call my husband a bastard for doing this to me and swear over and over again that he could never touch me again as long as we lived. I was afraid that I would feel what all of those women I had read about felt; like I wasn’t really a Mother. Like I hadn’t earned it.

I started thinking about whether it could actually happen. I started making little half plans in the privacy of my mind, but I didn’t tell anyone. I decided that if I made it through without a flare up, I was going to try for a vaginal. I looked at my Amsler Grid every day, crossed my fingers and researched tub births.

A telltale sign that the spots are starting to leak is when straight lines don’t stay straight anymore.

Two weeks later while driving on the highway I noticed the yellow line on the side of the road looked warped. While cutting vegetables for dinner the knife blade jumped to the side, I asked Christopher to finish . Before bed I watched a movie and when the credits rolled, they arched in the middle as they passed, like they were marching over the top of a hill, with a hole in the top.

I wasn’t going to make it.

You can read my birth story, chronicle of a scheduled cesarean section, on the page titled “The Slice… and Yank!”

Mae, I am so sorry you’ve had to deal with this. Wow, I had no idea. Let me just say that I don’t think anyone can judge or blame you for the decision you made along with the medical professionals assisting you. Your planned c-section is worlds apart from those who are “too posh to push”. I admire you for writing about this and the feelings you had. This is a great example of an actual medical reason for a planned c-section. And I can say, when I was screaming/holding my breath/ puffing up my cheeks while pushing my kid out my midwife and nurse both stopped me instantly and strongly cautioned me to “relax and breathe’ (in-effing-sane advice at the time) or else I would blow a blood vessel in my eye. I can certainly imagine the risk you would have been taking, and you’re absolutely right, it would not have been worth it. A momma deserves two functioning eyes to watch her baby grow up.

I can’t believe I just read this! My mom has this exact same thing. It first popped up in 2002 right before my sister got married. She has had recurring bouts of it ever since. It’s only in one of her eyes but they told her it was because she lived very close to the Missouri river when she was young. Hmmmmm. Weird!